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many faces of the Hopi [Photo Credit: wikimedia commons]

In honor of the UN International Day of the World’s Indigenous Peoples, it’s essential to pause and consider the social fabrics that dictate our understanding and perception of the field of ageing. An article from Indian Countryon North American indigenous peoples’ reaction to dementia within their communities helps us learn from one another.

While Alzheimer’s occurs at about the same rate among older Native Americans/Alaska Natives as it does within the continental United States, the approach to treatment is unique.

David Maes, of Hopi/Apache descent, is establishing a nonprofit in Denver, Colorado called Taawa Energy Center (Taawa) – meaning “sun” in Hopi.  The center will care for elders living with dementia through an approach that seeks and uses ‘the essence of the person’ for healing.

His focus in treatment changes from management of disease to caring for the whole person. “Specialists think they are treating the whole person, but in fact they’re fragmenting the person,” says Maes.

There is something that everyone around the world can learn from the Native approach.  Native Americans do not share the stigma and ageism associated with caregiving to elders.  In fact, it is associated with normal aging in the Indian community.  The community shares their input and support, traditional healing practices and traditional medicine with the elderly.

Maes says “among aboriginal and Native people, those with dementia [of which Alzheimer’s is one form] are the spiritual people, beginning to leave this world to enter a world where everything is positive and good. There’s no judgment in that world.”

To read the full story, visit: http://indiancountrytodaymedianetwork.com/2012/07/23/native-approach-to-dementia-stresses-human-spirit-124684#ixzz234x1rUBr  

Antipsychotics

Dr. Cheryl Phillips, geriatrician and senior VP or LeadingAge, blogged about the very serious dangers of over-medicating dementia patients.  This issue is seen as critical around the world and sends a global message for change. Rather than paraphrase, here is Dr. Phillips’ blog in her own words:

Federal officials are working to place compassion at the center of how our nation aims to treat elderly patients suffering from dementia.

The Centers for Medicare & Medicaid Services (CMS) has announced that they’ll coordinate an effort to dramatically reduce the use of antipsychotic drugs among dementia patients in nursing homes. The agency’s plan acknowledges that these powerful pharmaceuticals are often overused — and represents a valuable first step toward improving the way we treat people with this condition.

But government alone shouldn’t dictate how we deal with dementia. Families and caregivers must also recognize when medication is appropriate — and when it’s not.

More than five million Americans are afflicted with Alzheimer’s and related dementias. Coping with a loved one suffering from the disease is an immensely trying experience — one that can leave even the most stoic among us desperate to try anything to alleviate a family member’s suffering.

It’s no surprise, then, that nearly 40 percent of dementia patients living in nursing homes receive antipsychotic drugs. Overall, some 14 percent of nursing home patients are on antipsychotics. These are alarmingly high numbers, given how ineffective — or even dangerous — the drugs can be.

For starters, antipsychotics have not been approved by the federal Food and Drug Administration to treat dementia. No drugs have. Only about 20 to 30 percent of elderly dementia patients who take an antipsychotic drug show even marginal improvement.

For such unimpressive results, the potential harms are significant. For every 53 patients treated with such a pharmaceutical, one will die. And for every nine to 25 patients that benefit from an antipsychotic, one will die.

As a result, the FDA has issued a rare “Black Box Warning” stating that patients administered the drugs face a risk of death 1.6 to 1.7 times greater than those who take a placebo.

And yet, a blind faith in the effectiveness of antipsychotics that’s not borne out by the science remains. Abandoning this belief is a necessary first step toward improving the way we treat dementia — and saving lives.

To do so, we must first change the way we think about the illness. Many view dementia as the cause of a number of behaviors that need to be corrected or controlled. This misconception fits our cultural penchant for pills quite nicely. For instance, Grandpa George’s loud incoherence or Aunt Esther’s refusal to calm down are symptoms that need to be alleviated through medicine — or so the thinking goes.

But folks displaying the disruptive behaviors associated with dementia are more often trying to communicate with those around them. Their “acting out” signifies their frustration at their inability to do so.

Consequently, people interacting with them — whether family members or professional caretakers — ought to try first to understand what the patient is trying to convey. Then, they can take appropriate action.

For instance, yelling, wandering, or resisting care are not symptoms of psychosis and will not be resolved through the use of antipsychotics or other medications.

But if a drug is judged necessary, keeping close tabs on it is imperative. A checklist can be helpful. Is the person showing signs of improvement? Are they better able to engage with others and with their surrounding? Can that individual get by on a lower dose? Is the medication even working at all?

All too often, families and caregivers fail to ask these questions. That’s a mistake. Given the risks associated with antipsychotics, determining how to address dementia-fueled behaviors without drugs is vital.

Fortunately, there’s a growing body of evidence that supports the effectiveness of behavioral modifications and non-pharmacological interventions to treat dementia. This new approach isn’t just something for nursing home staffers or professional caregivers to consider — it’s important for us all. Odds are that we all know someone who suffers from the condition — or someday will. Decisions about their potential paths of treatment may fall to us.

CMS is right to try to reduce the use of dangerous antipsychotics in dementia patients. But it will not succeed without a shift in the way we all think about this debilitating condition.

[Photo Credit: dvortygirl, Flickr]

By Jackie Pinkowitz, M.Ed.; Board Chair, CCAL-Advancing Person Centered Living

[To support dementia initiativedementia care and learn more about research and practices, register for the International Alzheimer’s Disease Study Tour Today! ]

On Friday, June 29, 2012, The National Dementia Initiative, gathered in Washington DC at LeadingAge for their first meeting to form  recommendations on person-centered non-pharmacologic strategies to address behavioral and emotional aspects of caring for individuals living with dementia in home and community-based settings.

The meeting’s participants included nearly 60 dementia experts spanning research, policy and practice from around the United States. CCAL-Advancing Person-Centered Living is one of the leaders of this initiative.

Like most significant efforts, The National Dementia Initiative “will take a village” to achieve its lofty purpose which began in 2011 with the germ of an idea:  it should gather a leadership team representing research, policy and practice sectors that would:

  • Work diligently to connect dementia experts from all three sectors across the United States and beyond
  •  Who will volunteer their time and expertise
  • To collaborate virtually and in person reframing dementia care  by using a person-centered holistic well-being philosophy and approach
  •  In the context of understanding and responding to “difficult or challenging” behaviors through person-centered non-pharmacologic practices.
Dementia initiative, caregiving

All photos credit of CCAL

In the ensuing months, “sixty villagers” heeded the call and began virtual communications in preparation for our all-day gathering on June 29th, 2012 — a gathering that can only be described as passionate, intense, and singularly focused on our common purpose.  Today, the villagers are back home, enthusiastically volunteering for three  workgroups being formed  to advance this effort.

The aspiration of the recent meeting was to come together on key principles and practices of person-centered dementia care and provide input for a comprehensive White Paper, which will focus on how to support individuals living with dementia.  A workgroup of volunteer participants will be assisting in disseminating and distributing the final paper come September 2012.

To truly understand What Matters Most in our Initiative, you need to gaze upon some of the faces in this blog: faces of those we love, care for, and caringly assist with utmost respect and dignity.

When I opened our all-day gathering, framed photos of “Those who Matter Most” decorated every table and a beautiful kaleidoscope of faces flashed across the screen as I acknowledged:  “Clearly the most important people in our village are not here today—the people living with dementia, their families, and their care partners.  But they are with us in spirit and we honor them through all the wonderful pictures so many of you provided.  I know that if we continue to work together with open hearts and open minds, we will have an incredibly meaningful and productive meeting; and we will succeed in advancing this most important Initiative for these most important people.”

Dementia Initiative

So I urge you, regardless of whatever Change Effort you may be conceiving or currently leading,  to truly understand what drives your amazing villagers (i.e. What Matters Most  to them; what motivates and energizes them to give their all for a greater good) so that you may tap into it throughout your entire fascinating future-focused journey of change…

IAHSA provides an opportunity to join the conversation on What Matters Most and engage in dementia care best practices on October 15-20, 2012 in LA and San Diego, California. IAHSA, in partnership with Alzheimer’s Disease International, will host the International Alzheimer’s Study Tour which will explore the research and treatment protocols for early stage dementia as well as provide a shared learning experience through site visits with communities.

Register today!

On October 15-20 2012, IAHSA and Alzheimer’s Disease International (ADI) will be hosting the Alzheimer’s Disease International Study Tour in Los Angeles and San Diego, California, USA.

ADI and World Health Organization (WHO) came together earlier this year for a publication titled “Dementia: A Public Health Priority”.  The report raises awareness of dementia as a public health priority, to articulate a public health approach and to advocate for action at international and national levels.

According to the report:

  • The number of people living with dementia worldwide is 35.6 million and will double by 2030
  • Worldwide costs of dementia were US$604 billion in 2010
  • Countries must include dementia on their public health agendas
  • Dementia is not a normal part of ageing
  • Priority areas of action that need to be addressed within the policy and plan include:      

                        – Raising awareness

                        – Timely diagnosis

                        – Good quality continuing care and services

                        – Caregiver support

                        – Workforce training

                        – Prevention

                        – Research

These developments are particularly significant for developing countries, especially those in Asia, where populations are aging much more rapidly.

Dementia Statistics

                                                                                [credit: ADI, www.adi.co.uk]

In continuation with the findings of this report, the Alzheimer’s Study Tour will explore research and treatment protocols for early stage dementia and share learning experiences through site visits.  Registration ends August 2, 2012.  Don’t miss this chance to be a part of the international collaboration to address the global crisis.

Five innovative solutions have been developed to help people living with dementia as part of the Design Council challenge. The teams behind these solutions include designers, entrepreneurs and service providers, as well as experts in nutrition, dog training and olfaction. The concepts are focused on and around the point of diagnosis, aiming to be preventative measures that improve quality of life in the early stages of dementia for the increasing numbers of people being diagnosed. The five solutions demonstrate the vast potential of innovative ideas in an under-served market and show how design can play a key role in confronting a major social challenge. The Dementia Dog is one of the five examples, described as “assistance dogs for the mind”.

Dementia Dog is a service providing assistance dogs to people with dementia, helping them lead more fulfilled independent and stress-free lives. A sense of routine can often disintegrate for people with dementia. Dogs can be trained to live to a consistent routine. Ultimately, each dog will be trained with the person with dementia and their carer so all three can operate as a team.

Learn more about the pilot project on dementia dogs underway in the United Kingdom by visiting the website.

Photo courtesy  Tropewell.

Geneva, April 11, 2012 – A report released today by the World Health Organization (WHO) and Alzheimer’s Disease International (ADI) calls upon governments, policymakers and other stakeholders to make dementia a global public health priority. This new report provides the most authoritative overview of the impact of dementia worldwide. In addition to valuable best practices and practical case studies from around the world, it contains the most comprehensive collection of data, including hard-to-get statistics from low- and middle-income countries, thereby dramatically underscoring that this is truly a global problem and not just a “disease of the industrial world.”

To prepare the report, titled ” Dementia: A Public Health Priority ,” WHO and ADI commissioned reports from four working groups of experts and sought additional inputs from nearly two dozen international contributors and more than 20 expert reviewers. The project leaders were Dr. Shekhar Saxena, Director, Department of Mental Health and Substance Abuse, WHO; Marc Wortmann, Executive Director, ADI; Dr. Daisy Acosta, Chairman, ADI; Prof. Martin Prince, Institute of Psychiatry, King’s College London; and Ennapadam. S Krishnamoorthy, Director and T.S. Srinivasan, Chair, The Institute of Neurological Sciences, India.

“WHO recognises the size and complexity of the dementia challenge and urges countries to view dementia as a critical public health priority,” said Dr. Saxena. “Right now, only eight of 194 WHO member states have a national dementia plan in place, and a few more are in development. Our hope is that other countries will follow suit, using this report as a starting point for planning and implementation. A few, like India, have national strategies developed by civil-society organisations, and we hope this report will prompt their governments to adapt these into official national plans. Since we know the prevalence of the disease will explode in this century as we all live longer – the risk of dementia is 1 in 8 for those over 65 and a shocking 1 in 2.5 for those over 85 – its impact will become greater as the decades go by.”

In her foreword to the report, WHO Director-General Dr. Margaret Chan called the report “a major contribution to our understanding of dementia and its impact on individuals, families and society.”  She said the report “provides the knowledge base for a global and national response to facilitate governments, policymakers and other stakeholders to address the impact of dementia as an increasing threat to global health.” Dr. Chan called upon all stakeholders to “make health and social care systems informed and responsive to this impending threat.”

Marc Wortmann of ADI underscored the urgency of action: “With its devastating impact on people with dementia, their families, their communities and national health systems, dementia represents not only a public health crisis but a social and fiscal nightmare as well. Around the world a new case of dementia arises every four seconds. That’s a staggering growth rate, equivalent to 7.7 million new cases of dementia every year – the same size as the populations of Switzerland and Israel. Our current health systems simply cannot cope with the explosion of the dementia crisis as we all live longer; this is as much an economic and fiscal disaster waiting to happen as it is a social and health challenge of the highest order. However, the report also shows that there is a lot that can be done to improve the lives of people with dementia and their carers. The entire dementia community, and indeed the world, owes a huge debt of gratitude to the WHO to have taken the leadership in the creation of the report. The WHO is the singular organisation globally capable of such a critical role in matters of public health.”

Publication of the WHO/ADI report comes on the heels of an impassioned plea for action by global public health expert Prof. Peter Piot who, as former UNAIDS Executive Director, helped lead the world in turning HIV/AIDS from a certain death sentence into a manageable illness. In a recent speech, Prof. Piot described dementia – and Alzheimer’s disease in particular – as a “ticking time bomb” given the rapid growth in aging populations worldwide. According to ADI research, now given even further legitimacy in the WHO’s report, the number of people living with dementia worldwide, estimated at 35.6 million in 2010, is set to nearly double every 20 years, reaching 65.7 million in 2030 and 115.4 million in 2050. Drawing striking parallels between dementia today and HIV/AIDS in the 1980s, Prof. Piot argued that the world must tackle dementia with a similar level of urgency and concerted resources. “If the world needed a wake-up call, it is on this global crisis. I do not see any alternative than to treat Alzheimer’s with at least the attention we gave HIV/AIDs,” said Piot.

“Given these numbers,” said Michael Hodin, Ph.D., Executive Director of the Global Coalition on Aging and Senior Fellow at the Council on Foreign Relations, “Alzheimer’s, among all non-communicable diseases, demands our urgent and serious focus. We must find the political will and accompanying funding for more effective treatments, earlier detection and diagnosis, and most critically prevention and cures. Absent this level and scope of attention, Alzheimer’s will surely become the fiscal nightmare of the 21st century, quite apart from the personal, family and community devastation it causes in its wake.”

“There is an increasing body of evidence that the risk factors that can increase a person’s chances of developing Alzheimer’s disease are the same as those that cause many other non-communicable diseases (NCDs) such as cardiovascular disease, cancer, diabetes, and lung disease,” says Ann Keeling, Chair of The NCD Alliance and Chief Executive of the International Diabetes Federation. “Last year’s UN High-Level Meeting on NCDs in New York formally recognised that mental and neurological disorders, including Alzheimer’s disease, contribute significantly to the NCD burden worldwide. By working together to address these common risk factors, the global health community can make great inroads into the burden of disease caused by Alzheimer’s disease and these other NCDs, that together cause 3 in 5 of all deaths worldwide today.”

Photo courtesy Ron ashore

The mmlearn.org website is a free resource for caregivers and healthcare professionals that features videos on a variety of topics including dementia, nutrition, and quality of life. With engaging speakers, transcripts, and PowerPoint presentations, viewers can access  experts in aging from the comfort of their home or office. There is a special collection of videos in Spanish to meet the needs of the Latino community. An opportunity exists for hospice administrators,  long term care administrators and others to earn continuing educations credits through the website.  According to a viewer, the site fills an important gap by providing education for those working in organizations affected by the economic downturn. “Your website is a real treasure for Spanish speaking caregivers and health care providers,” says Erika.  Another user shares her sentiment stating, “This website is amazing!! The videos are very informative and it is great that you have such a wide variety of topics. I have watched four so far and plan on showing a few at our next caregiver support meeting.”

Check out the website today and see how you could be providing your employees with this great resource.

Prime Minister David Cameron announced Monday that the U.K. will double funding for dementia research by 2015. Dementia funding will go from “£26 million at the end of the last parliament to over £66 million at the end of this one,” he announced in a speech. He went on to say that the lack of response to the dementia challenge was scandalous and amounted to a national crisis.

The increase in funding will be funneled to NHS hospitals for diagnosis and treatment. Currently the U.K. has 670,000 people living with dementia but more than have of them have not been diagnosed. The total number of people living with dementia in the U.K. is expected to reach 1 million within a decade.

Raising rates of dementia cannot only be addressed as a biomedical issue, but also must be tackled as a social issue in terms of stigma, care giving, and structural supports to maintain personhood and dignity for those living with the disease.

Said Sir Mark Walport, director of the Wellcome Trust: “The dementia challenge will require progress in social care, so that patients can be helped to live at home for longer, and so that relatives who care for their loved ones receive the support they need. And it will require action to raise awareness of this devastating condition, so that it is understood and not stigmatised.”

Photo courtesy of  windelbo

Alzheimer’s Disease International 27th International Conference was one of the most successful ever, as activists and world leaders came together to discuss the science and treatment of Alzheimer’s disease. Check out this video hosted by Daisy Acosta and Marc Wortmann highlighting the event.

Want more information on Alzheimer’s disease treatment? Consider joining our study tour this fall.

The 27th International Conference of Alzheimer’s Disease International starts on tomorrow 7 March 2012  in London.

Conceived as ‘three conferences in one’, the event will feature parallel sessions focusing on scientific advances, social support interventions, and technological measures to address the disease.  This conference  involves professionals, scientists, researchers, policy makers, people living with dementia, informal and professional carers and all Alzheimer association staff and volunteers alike. Despite dreary statistics on the expected growth of dementia, this will be a conference that expands awareness and understanding of the disease and develops research networks to search for a cure.  The International Association of Homes and Services for the Ageing wishes Alzheimer’s Disease International a successful conference. If you’re attending the event use  the hashtag #ADI2012  on Twitter to share your thoughts during the event!

Check out this video that provides highlights of the event!

About this blog

IAHSA’s Global Ageing Network Blog was created because of you!! We got your message loud and clear – “Provide us with a quick and nimble communications vehicle so we can stay connected and create community across borders".

Questions? Email us at iahsa@leadingage.org.

Authors

Virginia Nuessle, Study Tour Director

Majd Alwan, Director, CAST

Alla Rubinstein, Program Administrator, IAHSA

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